I'm a 22 year old male who has been been suffering with exfoliative cheilitis for the past 8 years. I have many of the hallmark symptoms: red, puffy, raw, scaly lips that go through a continuous cycle of peeling. It works just like clockwork and I have to plan my life around it. Day one and two are my "normal" days where my lips are only inflamed, puffy and red; people have often commented that it looks like I'm wearing lipstick. On the third day, the entire layer of skin on my bottom lip, and the middle portion of my upper lip, harden, crack and slowly peel off. On these days I try to stay out of public view as much as possible. I can't point to a specific trigger that would have caused it or even the specific date when it started. I've been living like this for so long that I can't remember what its like to live any other way.
I've been researching this condition on the Internet for at least 6 years. Unfortunately, there isn't a lot of material to work with and apparently there is no cure. I've tried everything - nothing works. The doctor that I went to a few years ago was even more baffled than I was. I have essentially resigned to the fact that I will live with it for the rest of my life.
You cannot begin overestimate the psychological damage this condition has caused me. My self image has been completely destroyed. I can't bear meeting new people, I hate looking at pictures of myself, I shun bright lights and mirrors, and feel uncomfortable being in groups or even talking to my own family. After living for years with this condition, my confidence and passion for life have been worn down to nothing. I see normal people my age and long to be them.
So here I am, in the twilight of my youth, with nothing to show for my years except regret and bitterness, all thanks to exfoliative cheilitis. Some days I just want to wrap my car around a tree.
Anyway, I apologize for my lengthy rant... I needed to vent.